Friday, April 8, 2011

The day after release of the Schmidt report last week by Lyme advocates, the B.C. government announced $2-million for a clinical and research study of a variety of complex chronic diseases, including Lyme.

The possibility of a move in this direction was raised in correspondence with the Health Ministry (see previous post). It seems the release of the Schmidt report, with its frank admission of current failings, hastened the announcement as a way to change the channel.

Regrettably, it lumps chronic Lyme with Fybromyalgia and Chronic Fatigue Syndrome as diseases “where the cause is unknown”. This is worrisome as Lyme disease is caused by a known bacterial agent, and it has (like Syphilis) an acute and a chronic phase, which are scientifically documented.

Indeed, Schmidt canvasses the emerging science on how Lyme infection persists in the body, and the complexities of getting rid of it once it disseminates. It’s difficult, but he concludes that patients deserve access to therapies that are now withheld. The difficulty of eradicating lyme once it becomes chronic is why prompt diagnosis and effective treatment of new Lyme infection is essential.

“The clinic will take referrals from family physicians or other health care providers for patients with symptoms of these chronic illnesses. The goal is to help patients by accurately diagnosing their conditions, providing treatment and helping with ongoing symptom management.”

While this clinic can be a step in the right direction, much depends on whether the chronic-Lyme deniers at the CDC and among B.C.’s Infectious Disease Doctors are allowed to oversee it. If they are, obviously it will fail patients, and it will not develop the new knowledge and diagnostics that are desperately needed.

While there’s been informal contact with CanLyme about this idea, so far we haven’t been involved in its design and operation. Lyme sufferers want CanLyme at the table, in the same way the Canadian Cancer Society or other respected disease societies are involved in developing new programs. This would help steer clear of the rocky shoals of systemic bias and the suppressive guidelines in place today.

Since B.C.’s endorsement of the IDSA guidelines ensures that acute Lyme disease is radically under-diagnosed, the incidence of chronic Lyme disease will only continue to mount despite the new initiative. The Schmidt report acknowledges that, given current conditions, we lack a clear picture of how much Lyme infection there really is in B.C. The official story is that it’s rare, based on the few cases confirmed by two-tiered testing – which Schmidt says is unreliable.

We’re urging Health Minister Mike de Jong to make a fresh start by commiting to implement Schmidt’s eight recommendations, beginning with a clear message to all GPs that chronic Lyme disease is a treatable illness under Medicare.

Importantly, a specialty clinic for complex chronic illnesses was not among Schmidt’s eight priorities. Clearly he’d heard of it, as he noted that “a complex care clinic may have merit in the future”. However, he says that “as a first step, attention must be given to immediate action on the development of better diagnostic technologies to detect bacterial and other organisms that may be responsible for chronic Lyme and Lyme-like symptoms.”

“Without better diagnostics there will be no certainty, and little basis for rational treatment decisions.” Today it’s evident we lack a framework for rational decisions about Lyme.

The biggest pitfall is that the $2-million program could be used to whitewash existing practices, which are shoddy and consistently fail patients. The existing two-tiered test regime misses virtually all new Lyme infection, and is poorly suited to detecting chronic disease.

The ELISA – a junk-test for Lyme that should be dropped entirely – is relied upon by many GPs and most IDDs to rule out Lyme disease definitively. Given what’s known about its failings, this is unethical! Show negative on the ELISA, which most do, and you do not have Lyme disease, period and forever in B.C. This must change!

If your acute infection is missed – which it nearly always is, as only one in thirteen B.C. doctors (based on the CDC’s own survey) have the confidence and/or moxy to diagnose and treat Lyme disease from symptoms – you will develop a chronic form of the illness, which is debilitating.

Once you have chronic Lyme, you’re entirely on your own in B.C., as the IDSA guidelines (enforced behind the scenes by the BC CDC Lyme ‘experts’) deny its existence entirely. Infectious Disease Doctors, who currently control access to longer courses of antibiotic therapy, refuse to treat anyone for longer than four weeks, once in a lifetime, and never without a positive Western Blot in B.C.

Among the hundreds and hundreds of newly infected people each year, fewer than ten on average show positive on both an ELISA and a Western Blot.

If you have a negative ELISA in B.C., get ready to go to the USA and buy your care there. It’s credit card medicine all the way. The test-reliant IDSA guidelines turn Lyme into a self-pay disease and the only option for most is outside Canada. Pity those with no resources – it’s a descent into hell with no reprieve.

Current guidelines imported from the private healthcare system to the south of us remove your right of timely access to medically necessary care by design. As a result, Lyme is in effect largely a privatized illness in Canada.

This is what needs to be focused on in B.C., and the Schmidt report offers the way forward. My next posting will outline Brian Schmidt’s sensible, patient-centred approach to Lyme diagnosis and treatment. It remains a wonder that someone highly placed managed to approach the topic with such an open mind!

I urge Minister de Jong to move ahead with implementing the Schmidt recommendations – they provide the foundations for a progressive approach that will make B.C. a global leader in Lyme detection and cure.

One day I’d like awaken to a Vancouver Sun headline like the one last week on HIV-AIDS – “Made-in-BC test used worldwide”. We do know how to get that sort of thing done here in B.C. We have the innovative research capabilities. We just need the ‘can-do’ attitude to tackle the challenge.

This blog is about the rise of Lyme disease and other tick borne infections, in British Columbia and across Canada, and the failure of public health agencies to adequately warn and protect the public from this debilitating disease. Its purpose is to alert people to a danger that increasingly surrounds them, in the outdoors and in their backyards, and to pressure government, opinion leaders and public health officials to reform the medical framework for Lyme disease diagnosis and treatment. Today, due to faulty tests, lack of physician knowledge and inadequate treatment protocols, many patients are being forced to live with a devastating chronic illness rather than being given medically necessary care. Most have to travel to the United States to purchase healthcare they are entitled to under law in Canada, but currently denied. Many people are living in poverty as a result of personally financing antibiotics, which are the sole control and cure for chronic Lyme disease. This blog discusses issues and offers resources relating to Lyme disease diagnosis and cure. It aspires to be an instrument of change.

David Cubberley

I'm a community activist and have worked as both a Saanich Councillor and a Member of the Legislative Assembly for Saanich South (where I served as provincial Health Critic and first learned about Lyme). I advocate much-improved diagnostic and treatment protocols for Lyme and its co-infections, and for clear recognition of Lyme as a chronic, treatable disease. I also lobby for doctors to be informed not to rely on current Lyme testing, which is faulty but often used to rule out Lyme and withhold treatment. I have been serving as BC Director of the Canadian Lyme Disease Foundation (CanLyme)since 2009. Much information and advice about this complex and troubling disease is available at the CanLyme website: http://canlyme.com/. To arrange for public presentations on Lyme disease and public health, please contact me at: spokesman@telus.net.

ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.